praying, fighting, crying together for Ella Joy

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In the beginning …

It all started when I was tickling Ella Joy’s leg, and I noticed a lump. When our pediatrician saw it, he noticed one enormous lymph node in her groin area along with several smaller ones. He said since her livelihood is good, and her bloodwork was normal, to wait it out for another few weeks. It turned out that her lymph nodes grew, and we were referred to a pediatric surgeon. He advised us to wait another 3 weeks to see if the lymph nodes would go down on their own. He said 9 out of 10 cases turn out benign. So, we waited, but when we came back for a follow-up, we saw another pediatric surgeon, and together we agreed she needed to have a biospy of the entire enlarged lymph node. God orchestrated everything perfectly. The surgery got moved up an hour earlier, but everything turned out. We were so thankful our pastor came to pray for her right in the nick of time. And we were also grateful to my sister who watched over Asaph who was not allowed in the recovery room. She went under for anesthesia, and the surgery went very smoothly. However, waking up in recovery from anesthesia was a very different story. She was crying and trying to stand up. It was very challenging for Mike and I to stop her from thrashing around. The nurse gave her some pain medication so she would calm down and not hurt herself. The nurse was just about to give her stronger medicine, and then she fell asleep. After 2 hours in recovery, she was ready to go home. When we asked if she needed some pain medication, she said “no thanks” and started limping about the house. She was sad she could not do strenuous activities around the house, but she loved reading her books, and she pretended she was a teacher and performed story time for Asaphie and myself. She read books, and in between had some action songs and passed out sticks to us to dance with for the “freeze song.”

Her surgery was on a Wednesday, and we were supposed to get the results from the biopsy on Monday, but the next day I was resting on the couch after putting the kids down for a nap. I was surprised to see Mike home from work. He told me to sit up, sat down next to me, and told me that the results came back positive for non-hodgkins t-cell lymphoma cancer. I was in shock and could not believe it. My heart felt like it was pierced 100 times over. We embraced each other and cried together, but Ella Joy woke up soon after and we had to pull it together. I tried to keep Ella Joy and Asaphie busy playing with magna tiles and blocks while we made phone calls and prepared for a very difficult road ahead for us. That night I did not sleep. I was praying all night to God, weeping, and asking Him to protect Ella Joy. When her body is weak from the chemotherapy, that she would not be discouraged. When her hair falls out, God would remind her that her inner character is what truly makes her beautiful. One time, I was telling her the story of snow white and I put in her name instead of snow white. I came to the part where the mirror said that Ella Joy Sun Young of the May May’s was the most beautiful, and the queen was angry and sent for the woodsman to get rid of Ella Joy, but she was too … and Ella Joy said, “I know, the woodsman felt sorry for Ella Joy because she was poor and had a lump.” It broke my heart to hear her say that. It must be so confusing for Ella Joy to see her appa and mommy crying and praying, and just trying to pull it together.

The next day, we had no time to spare, we made appointments with 2 oncologists and we talked with a 3rd. After talking with a family who shared valuable insights from their past experiences with her their daughter, we decided to go with Lurie AKA Children’s Memorial. This poses another challenge because for the most part, I (Anne) will be the one to drive her for her chemotherapy appointments, and everyone who knows me knows that I am extremely terrified of driving in downtown Chicago for one and a half to 2 hours. I actually have no idea what to do when the fierce winter comes. So I need stored prayers that God would help me to drive back and forth safely so we can get Ella Joy to her Chemotherapy treatments. We knew before we could figure out staging and the road map, Ella Joy would need to undergo a bone marrow sample, a ct scan, and a spinal tap, and possibly a pet scan. After hearing our Ella Joy had cancer, the only place to go in on my knees. We were so incredibly thankful for the army of prayer warriors, our friends who joined us on our knees in prayer. Supporting us, loving us, and interceding for us. We are going to need all these storehouses of prayers for the tough and challenging times ahead of us. Even when we were going from hospital to hospital, God provided friends and family to watch over Asaph and Ella Joy. We know that it might be another challenge to find people to help watch over Asaphie, but with my sister and friends, we know God will continue to provide when we need it. We were incredibly thankful for a dedicated prayer warrior who made it a point to come down with two of our close college friends to share with us and pray with us and for Ella Joy and Asaph. She said when she heard that Ella Joy had cancer, she couldn’t sleep and she was crying thinking about the tears we shed & the pain we were feeling. That night we went to a revivial meeting because we knew we needed God’s word and prayer to refuel us for the valleys ahead. Ella Joy is already seeing the body of Christ at work, a basket of cookies sent for her, a bag of food at our door, and most of all prayers from family and friends that are being lifted up to God as incense rising. A friend brought her a rainbow loom, and Ella Joy said that she knows she has 2 jobs in her life: 1.) to help people when they are hurt, and 2.) to make bracelets with her rainbow loom.

The next day two days were all day in the hospital. The first day, we went to St. Alexius and delivered the slides, path report and block (they normally do not release, but they made an exception) to Lurie. We talked with our oncologist Dr. Morgan, and a child life specialist brought out a chemo doll and tired to explain what would be happening to Ella Joy the next day.

The next day, we went in early, and started with having Ella Joy drink contrast (which dyes her insides for the ct scan). She was almost finished with it, and then she vomited it all out. So, we started again and it was very difficult for her to drink again. In fact, she did not drink it. For the echo, she was calm at first, but then she started to cry out that she wanted to go home. She was over tired, and didn’t want to be in the hospital anymore. She eventually fell asleep and they finished the echo. Next, she needed to once again put on the gas mask, but she was reluctant because she remembered her bad experience with it when she woke up from recovery when she had her surgery. It was hard to see her crying, but once she went under, she had a spinal tap, bone marrow extraction, and ct scan. This would be her first chemotherapy in her spine, and they gave her a dose of zyloprim which we were thankful she took well to. We will be giving this to her for the next week 2X a day with Zofran available if she needs it.

Dr. Morgan was honest with us and let us know Ella Joy’s cancer has spread and cancer is in her bone marrow. She is in the 4th stage of cancer. The cancer has spread to her groin, neck, chest, abdomen, and armpits, and bone marrow. This devastated us, as we realized she is in a very critical stage and that her survival rate is a lot lower than we had expected. We are also in the process of contemplating whether we want her to be involved with clinical studies. Please pray God would give us wisdom as we make these decisions. We ask you to continue praying with us for Ella Joy to be strong and take well to the chemotherapy as that will help determine her likelihood to fight this cancer. We thank you in advance for your faithful prayers as we pray, fight, and cry together for Ella Joy.

I received news about Ella Joy. I am praying for a miracle and hoping that it arrive soon. I know that the prayers of the righteous availeth much. God is able. You and your family are in my thoughts and prayers. Please let me if I can come up and help.

Frances Ella’s Cubby leader is my daughter. I will be praying. We know Dr. Morgan and she is wonderful!!! My son and other daughter both have had her for lymphoma. Ella will receive excellent care. We love the folks at Lurie!!

My son had Dr. Morgan also. She is an awesome Doctor and will do everything she can for you. The rest is up to God and please know that I will be one of the many sending Ella Joy’s name up to Him everyday!!!!! Kim